8/3/2023 by George Ackerman, Ph.D, J.D.
Biography
My name is Esther Labib-Kiyarash. I am 48 years old. I have been married for 20 years to my amazing husband and have 2 children 10 and 11. I grew up in Las Vegas but now live in El Paso, TX. Professionally I have a master’s degree in healthcare administration and am a healthcare administrator that specializes in Performance Improvement, regulatory compliance, and Risk Management.
Please tell me a little about your background and what got you involved with awareness.
I was diagnosed with Young Onset Parkinson’s disease in February of this year after a 2-year difficult journey to a diagnosis. I became involved with awareness because I did not know very much about Parkinson’s until I had it. What I thought I knew was very wrong and different from what it was like. I realized I didn’t know anyone with this disease, had been given little information from my doctor and never saw anyone with tremors in public.
I had a TikTok account, and I began posting about my diagnosis and following people there to learn more about my disease. I noticed that I rarely saw people that looked symptomatic, they would say they had a tremor, but I wouldn’t see it, this made me feel very invisible. I started posting about my symptoms and showing my tremor more. This simple act, along with explaining the different symptoms of the disease and how it feels really resonated with people. I now have over 1500 followers and one of my videos has over 125,000 views on TikTok. This video was about my diagnosis which means many more people now see what this disease looks like and entails. I hope that one day people will see YOPD like other conditions (autism, Tourette’s, multiple sclerosis) that have visible motor signs and become more accepting so that people are comfortable in their bodies and to live without fear of judgement.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is improving the quality of life of Parkinson’s patients through standardizing the process of informing them of their diagnosis. I also want to make Parkinson’s patients more visible and normalize our different body movements (shaking, slowness, speech differences, etc.)
I want individuals to understand what an individual goes through. There are a lot of misconceptions like we are going to die early. However, it is a chronic disease that progresses over time.
I would see people talking about their experiences, but I did not see people shaking and I was thinking about the differences in individuals who show different symptoms. Once I had the tremors, I understood that people look at you in a different way. I was upset because I felt it is not fair. We have a movement disorder, but people need to see it and be aware and understand it.
I am trying to show how we really look and allow others to not be so surprised or scared.
Can you tell me more about Young Onset PD?
When I was diagnosed, everyone around me seemed baffled and rare that a young person could get PD so young. We must navigate our work, how to explain it to our children but it makes me hopeful because this is all my children know. I think about how my voice changed when I had my first child. My children grew up with me having this disease and there is no guidebook as to my health or raising children while having Parkinson’s. That scares me the most. Also, health care providers need to be more aware and learn more about early onset.
We go through years of misdiagnoses and do not understand the diagnosis, but it is more common than they know. Under 50 is young onset and under 40 is early onset.
What type of impact do individuals with Parkinson’s have when viewing you on social media?
That is the most surprising thing and heartfelt that I can reach and talk to people about my experience. They feel they have someone who understands. When I was diagnosed, I found people to talk to and ask questions about PD. I was happy to find individuals who took time to share their experiences. I spend many hours every day because my social media keeps growing and growing from people around the world.
It is satisfying because I have been there, and it is unfortunate sometimes that we must go online since there are many local resources that are not there.
What would you like to see as a future goal for your advocacy?
I would like to continue to reach many individuals through my social media and act as a support through my own experiences and journey with Parkinson’s. I am currently on-boarding as an Ambassador for the Parkinson’s Foundation
How does this also assist the caregivers?
I have had many caregivers reach out to me and thank me for explaining what it is like to have this disease. It is hard for caregivers because they really want to understand, and it is hard to explain sometime. I enjoy sharing my experiences with them.
How can someone get in touch? What is your website?
Instagram @shakyboots1 or TikTok @elabibkiyara
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
To the Parkinson’s community I would say this: we need to UNITE! Young and old, demand more, Parkinson’s Disease is fast growing unfortunately. Younger people are getting diagnosed every day. Yet for some reason we hide in the shadows. It’s time to stand up, be seen, demand change, more support, more resources, better medications A CURE.